Informed consent: A broken contract

From Nature:

Late in May, the direct-to-consumer gene-testing company 23andMe proudly announced the impending award of its first patent. The firm's research on Parkinson's disease, which used data from several thousand customers, had led to a patent on gene sequences that contribute to risk for the disease and might be used to predict its course. Anne Wojcicki, co-founder of the company, which is based in Mountain View, California, wrote in a blog post that the patent would help to move the work “from the realm of academic publishing to the world of impacting lives by preventing, treating or curing disease”. Some customers were less than enthusiastic. Holly Dunsworth, for example, posted a comment two days later, asking: “When we agreed to the terms of service and then when some of us consented to participate in research, were we consenting to that research being used to patent genes? What's the language that covers that use of our data? I can't find it.”

The language is there, in both places. To be fair, the terms of service is a bear of a document — the kind one might quickly click past while installing software. But the consent form is compact and carefully worded, and approved by an independent review board to lay out clearly the risks and benefits of participating in research. “If 23andMe develops intellectual property and/or commercializes products or services, directly or indirectly, based on the results of this study, you will not receive any compensation,” the document reads. The example points to a broad problem in research on humans — that informed consent is often not very well informed (see 'Reading between the lines').

More here.